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A. Motivation for the Study  Learning more about our clients with ASD and their parents, from our Autism and Culturally & Linguistically Diverse (CLD) clinics at CSULB.  Gaining a deeper insight into parents’ perspectives regarding autism for further support and understanding. 4

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RISK FACTORS & CHARACTERISTICS -AMONG IDENTICAL TWINS, IF ONE CHILD HAS AN ASD, OTHER TWIN WILL BE AFFECTED 36-95% OF THE TIME -PARENTS WITH A CHILD w/an ASD HAVE 2-18% CHANCE SECOND CHILD WILL BE AFFECTED -CHILDREN BORN TO OLDER PARENTS AT HIGHER RISK FOR ASDs -SMALL PERCENTAGE OF CHILDREN BORN PREMATURELY OR w/LOW BIRTH WEIGHT AT GREATER RISK FOR ASDs -MAJORITY (62%) OF CHILDREN IN CDC’s MONITORING NETWORK (ADDM) IDENTIFIED w/an ASD DID NOT HAVE INTELLECTUAL IMPAIRMENT (Intelligence quotient <=70) 6

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DIAGNOSIS - RESEARCH HAS SHOWN DIAGNOSIS OF ASD AT AGE 2 CAN BE RELIABLE, VALID & STABLE -MORE CHILDREN ARE BEING DIAGNOSED AT EARLIER AGES-A GROWING NUMBER (18%) BY AGE 3 -MOST CHILDREN NOT DIAGNOSED UNTIL AFTER AGE 4 -EARLIER FOR CHILDREN w/AUTISTIC DISORDER (4 years) -SOMEWHAT LATER FOR CHILDREN MORE BROADLY-DEFINED ASD (4 years, 5 months) -MUCH LATER FOR ASPERGER DISORDER (6 years, 3 months) -STUDIES CONFIRM THAT PARENTS OF CHILDREN w/ASDs NOTICE DEVELOPMENTAL PROBLEMS BEFORE CHILD’S FIRST BIRTHDAY 7

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C. Literature Review 9 Gray’s study–Showed improved relationships with extended family over time -Less concern about public behavior; better coping skills -More successful communication Other changes over the 10 years of Gray’s study: -More concern about violence; failure of child to “recover” -Reduced quality of life -Criticism of available services

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C. Literature Review 10 Phelps, McCammon, Wuensch, & Golden, 2009–295 parents of children with ASD in North Carolina surveyed re: support Results: -Stress was buffered by support from families, spouse, similar families -Formal support through early intervention and other services rated both helpful and unhelpful

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C. Literature Review 12 Other surveys… -Showed disruption in family functioning -Resentment of siblings due to restrictions in family life -Parent and sibling embarrassment -Sibling feelings of neglect

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C. Literature Review 13 ISSUES WITH BILINGUALISM: -More than 300 languages spoken in the US -Approximately 1 in 5 residents of the US over age 5 speaks a language other than English -Parents seek clarity about bilingualism and ASD Professionals, including SLPs, often caution parents to speak English only Cite confusion and overstressing language system -Contradicts ASHA position (2011); must show deference to family preference

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C. Literature Review 14 -No research shows detrimental effect of heritage language on language impaired children -Intervention should be provided in heritage language of children with impairments (Kohnert, Yim, Nett, Kan & Duran, 2005) and others -Yu (2013) cited biggest challenge to Chinese parents of child with ASD… lack of available intervention in Chinese languages

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4. Procedure -Examiner contacted parents of clients in Autism and CLD clinics. -Examiner administered questionnaires in English and Spanish, either in a private room at CSULB or via telephone, according to each parent’s preference and convenience. -Parents were notified of their confidentiality rights by the examiner before the interview began. 19

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1. At what age did your child/children first receive a diagnosis of Autism Spectrum Disorder (ASD) ? 17/18 parents reported diagnoses between 2 and 6 years of age. 1/18 parent reported a “very late” diagnosis (i.e., 13 years-of-age). 21

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2. What was your initial reaction to the diagnosis? Why? 13/18 parents reported feelings of disbelief, complete shock, sadness, worry and being upset. In one case, parent reported feelings of depression. Reported reasons for feelings: -Lack of knowledge about autism -Uncertainty about what to do -Worries about the child’s future 22

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2. What was your initial reaction to the diagnosis? Why? A few parents (3/18) reported feelings of relief, and in one case of “peace”. The predominant reasons for these feelings were due to receiving the “Autism Label”: -Opening the door for services -Helping explain child’s behaviors to themselves and others 1 parent reported “being prepared” and encouraged the evaluation. 23

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One mother’s testimony of her initial reaction towards the autism diagnosis… “I can remember that day like it was just yesterday. I couldn't stop crying…there were days when I would lock myself in a room and cry and cry and cry. It was really hard to understand and accept that my child had autism.” Anonymous 24

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3. Do you feel the diagnosis was received at an appropriate age, or should it have been received earlier? Why? Most parents (12/18) felt that the diagnosis should have been known earlier. The following reasons were given: -Mothers or extended family suspected and felt there was something “wrong” -Child presented with autism “red-flags” (limited communication/ social abilities) 25

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3. Do you feel the diagnosis was received at an appropriate age, or should it have been received earlier? Why? Some parents (5/18) felt that the diagnosis was made at the right time… Because child was presenting autistic-like characteristics at the time of the initial diagnosis. Only 1 parent reported “not being sure.” 26

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4. What resources for information and support were offered to you at the time of diagnosis by the professional making the diagnosis? Mixed results: 10/18 parents expressed disappointment for not having been offered information and support. 8/18 parents reported having been offered parenting classes, support groups, information about autism, and/or services for their children. 27

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A mother’s testimony of her views on information/support the time the autism diagnosis was made… “There was no support for me when I was first given the autism diagnosis. It’s like professionals telling you, your son has cancer, and sending you home without any solution or at least hope or moral support…” Anonymous 28

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5. What resources for information and support have been offered to you in the days/months/years following the initial diagnosis? Most parents (12/18) reported having been offered resources for information and support at the time following the initial diagnosis, mainly, in the form of… -Support group information, parent classes, general autism information, and/or services for their children. 29

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5. What resources for information and support have been offered to you in the days/months/years following the initial diagnosis? Other parents (6/18) reported not having been offered any information or support at the time following the initial diagnosis. Some of them felt as if they had to really “push” the system to obtain services and information, and reported “struggling” to find support and resources on their own. 30

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A mother’s testimony of her views on information/support following the time the autism diagnosis was made… “It is very important to share information with other parents and students. I would have appreciated having information and support following my child’s diagnosis. I am now a volunteer. I organized a group and provided information to parents of children with autism.” Anonymous 31

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6. From whom did you receive these additional resources for information and support? Parents who reported having been offered resources for information and support following the time after the initial diagnosis, often listed the following sources: -Regional Center -Public school -Other parents & friends 32

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7. Do you feel there are additional resources for information and support that you have had to research on your own? Where did you find these resources? All parents (18) felt there were additional resources for information and support that they had to research on their own. The following chart shows where parents were able to find additional resources: 33

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Additional resources The Internet Other Parents Local Autism Groups The Regional Center Autism Conferences Parent Support Groups 7. Do you feel there are additional resources for information and support that you have had to research on your own? Where did you find these resources? 34

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8. How many hours per week do you devote to obtaining services and providing care for your child/children with ASD? Range of hours/week devoted for obtaining services and providing care were reported as follows: 35 Hours per Week Range Services2-13 hours Care50-65 hours

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9. Do you feel your relationships with your spouse, other children and friends suffer due to the time you must devote to your child/children with ASD? In what ways? Almost equally divided views: Most parents (10/18) felt that their relationships with spouse, other children, and friends suffer due to the time devoted to caring for their child/children with ASD. These parents reported having less time for socializing, keeping in touch, and spending quality time with others. 36

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9. Do you feel your relationships with your spouse, other children and friends suffer due to the time you must devote to your child/children with ASD? In what ways? Some parents (8/18), however, felt that their relationships with spouse, other children, and friends Did Not suffer due to the time devoted to caring for their child/children with ASD. 37

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A mother’s testimony of her views on relationships and the time devoted to her children’s care… “I don’t have any friends, I can’t call anybody or go out, I feel lucky that the relationship with my husband has not ended. We don’t get to spend any quality time.” Anonymous 38

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10. How do your other children (if applicable) react to having a sibling with ASD? Question #10 did not apply to 8 of the 18 parents who were interviewed (7 reported child with ASD as “only child”, 1 reported both of her children as being diagnosed with ASD). Question #10 did apply to 10 of the 18 parents who were interviewed. The results were as follows: 39

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10. How do your other children (if applicable) react to having a sibling with ASD? From 10/18 parents, -6 parents expressed that their other children have a loving and typical relationship with the sibling with ASD. -4 parents reported that relationships are affected and are not typical due to other children experiencing: -Difficulties in playing and interacting with their sibling -Feelings of frustration or annoyance with their sibling 40

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A mother’s testimony regarding her daughters’ reactions to having a sibling with ASD: “It was difficult explaining to my other children about autism. I can remember the day that they told me they didn’t want their brother; they wanted a brother who wanted to play with them. This made me cry a lot. I explained to them that their brother was different and that it was not his fault. They still didn't seem to understand. I took them to Long Beach Memorial Hospital for an event that was being held for children with disabilities and handicaps. As my daughters saw the other children with various issues, I could see something happening within them. Later that day they told me that what their brother had was nothing compared to the other children they had seen and that they did accept their brother the way he was. This made me cry, but this time it was tears of happiness.” Anonymous 41

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11. How does your extended family react to having a relative with ASD? 14/18 parents reported a positive reaction from the extended family. They described the reactions with one/some of the following attributes: -Supportive -Helpful -Understanding -Loving A few parents (4/18) reported extended family as being “neutral” (i.e., not helpful or not understanding). 42

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12. How do members of your community react to your child/children with ASD? 6/18 parents reported mixed feelings about the community (e.g., strangers are judgmental & church/neighbors are accepting). 6/18 parents reported the community is accepting and understanding. 4/18 parents reported the community is judgmental. 2/18 parents reported the community is indifferent. 43

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Anonymous testimonies from parents regarding their feelings towards the community: “Neighbors and the church are very understanding, but when out in the community…people would stare weird at my son.” “Out in the community it’s very hard to have people understand about autism…” “When we are out, my son is criticized inadequately, like if he was throwing a tantrum or misbehaving…” 44

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13. In your culture, is ASD widely recognized and discussed? Why do you thinks so? CULTUREIs ASD widely recognized? Why parents think so? Euro-American & African American Yes-Autism is in the media -People talk about autism -More information & support groups Latino Not sure, most think no -Some people talk about autism -But, people worry about other disabilities Korean & Chinese Not sure, most think no -Older generations not aware, since autism is not “visible”, younger generations may be more aware 45

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An Asian mother’s testimony of her views on autism awareness: “In the U.S. the media gives a lot of information on autism, but still people are not empathetic; they are close minded …people think children with autism are “crazy” since the disability is not visible like in mental retardation or blindness. When the disability is visible people are empathetic, helpful, and nicer…” Anonymous 46

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14. In your culture, what is thought to be the cause of ASD? Do you think this view is accurate? CULTURETHOUGHTS ON CAUSE OF AUTISM IS VIEW ACCURATE? Euro-American & African American -Vaccinations -Environmental factors -Heredity -Unknown -Most parents lean towards the vaccination & environmental hypotheses but not sure if either view is accurate Latino-Heredity -Environmental factors -Unknown -Most parents not sure which view is accurate Korean & Chinese -Karma -Unknown -Karma view is not accurate 47

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15. Do you feel your child/children with ASD could function as an adult in society without ongoing care from you/other caregiver? Why or why not? 14/18 parents reported that their child/children could either not function as an adult or that they were not sure yet. 4/18 parents reported that their child/children could function as an adult. The following chart depicts the reasons for both beliefs: 48

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16. In the event that you are no longer able to care for your child/children with ASD, what resources do you have at your disposal for his/her care? Half of parents (9/18) reported family members as designated caregivers for their children. Other half (9/18) were either “not sure yet” or reported a group home as a care option for their children. 50

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17. Do you feel these resources will be adequate to provide the care your child/children requires? Why or why not? Almost equally divided views: Most parents (10/18) reported uncertainty (i.e., resources won’t be adequate/don’t know): “Others will mainly babysit my son and not teach him how to think…they will not advocate for him.” “My son is too much responsibility…” 51

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17. Do you feel these resources will be adequate to provide the care your child/children requires? Why or why not? Some parents (8/18) reported that they felt resources will be adequate since they can trust their family; “family is supportive and loving.” 52

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18. Do you feel your child/children with ASD have received/is receiving an appropriate education in the public school system? Why or why not? Question #18 did not apply to 4 of the 18 parents who were interviewed (i.e., child/children enrolled in private school/home-school or, in one case, son was over 40 years of age). Question #18 did apply to 14 of the 18 parents who were interviewed. The results were as follows: 53

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18. Do you feel your child/children with ASD have received/is receiving an appropriate education in the public school system? Why or why not? Mixed results: Half the parents (7/14) reported not being satisfied with the education received by their children; other half (7/14) reported being satisfied. The following chart depicts the reasons given by both groups: 54

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Reasons why parents were not satisfied Reasons why parents were satisfied -Curriculum is not tailored to child’s needs (too fast/too slow) -Curriculum is tailored to child’s needs (small class, interactive) -School focuses on “babysitting” vs. academics -Curriculum focuses on functional aspects/independent skills -No behavioral supports, learning can’t take place -Teacher is supportive and dedicated 18. Do you feel your child/children with ASD have received/is receiving an appropriate education in the public school system? Why or why not? 55

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19. Do you feel your child/children with ASD has received/is receiving all additional services due to them from the public school system? Why or why not? Majority of parents (i.e., 9/14) whose child/children attend public school expressed dissatisfaction regarding provision of services. 4/14 parents were thankful for services and/or understand school’s limitation of funds, and 1/14 parent reported “not being sure.” 56

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Reasons why parents were not satisfied -Child is not receiving all services needed -Child is receiving all services needed, but not in adequate frequency nor duration -Parents feel they have to struggle to obtain services at school, thus have to acquire them privately 19. Do you feel your child/children with ASD has received/is receiving all additional services due to them from the public school system? Why or why not? 57

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20. If not enrolled in public school, is your child/children with ASD home-schooled or enrolled in private school? As reported by parents: Children are enrolled in public schools Children are enrolled in private schools Child is home schooled

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21. Has your child/children with ASD always been home-schooled/enrolled in private school, or did you withdraw your child/children from the public school system? 59 Type of SchoolAlways enrolled or withdrawn from public school system ? Private school Participant 1 & 2Withdrawn from public school Home-school Participant 3Always home-schooled

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22. If you withdrew your child/children from the public school system, when and why did you make this choice? 60 Participants withdrawn from public school to private school When parents made choice Reasons why parents made choice Participant 1A year ago (i.e., 2012) -Safety reasons -Bullying Participant 2December, Not receiving adequate attention or education

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23. If your child/children with ASD is not enrolled in the public school system, how are you obtaining the full range of services that would be provided through the public school? 61 Type of schoolServices are obtained: Private School 2 participants-Parents own funds and/or private school Home School 1 participant -Parents own funds -Asking friends and educational consultant for advice

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24. Please share any other information regarding your child/children with ASD and your concerns which have not been addressed in the preceding questions. “If it wasn’t for my efforts and pushing for services and resources, both my children with autism could be doing worse…” “I worry about my child’s future, I want him to pay attention and be independent. Maybe through technology, ipad or computers, he could be able to do so.” “My main desire is for my son to have a friend…” 62

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E. Highlights & Implications of Survey Overall, what we learned from the survey on parental perspectives has implications for… SLPs and Student Clinicians: -Counseling courses -Mentoring the parents -Mentoring the community -Being an advocate for ASD 63

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65 FAMILIES: FROM FIRST CONCERN TO DIAGNOSIS Table 1. -PARENTS ARE WAITING: LENGTHY GAP BETWEEN PARENTS’ INITIAL CONCERNS TO FORMAL DIAGNOSIS -PARENTS ARE LOSING VALUABLE EARLY INTERVENTION TIME -IMPLICATIONS FOR EVENTUAL OUTCOMES FOR THEIR CHILDREN

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Continuation…  BROAD RANGE OF SERVICES MAY BE REQUIRED FOR CHILDREN w/AUTISM DEPENDING ON THEIR SPECIFIC ISSUES INCLUDING : -SOCIAL SKILLS TRAINING -MEDICATION MANAGEMENT -ABA -DISORDERS THAT CO-OCCUR w/AUTISM: ADHD, DEPRESSION, ANXIETY  ONE IAN MOTHER SAID, “This is absolutely the MOST difficult part of having a child with ASD. I am so tired of fighting.”  ONE FRUSTRATED IAN FATHER COMMENTED, “We are told early intervention is vitally important but we have no support in getting or paying for the services. We are completely on our own to help our child.” 67

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FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH REPORT, 2009, N=4028)  IAN PARENT RESPONDED, “The greatest part of this stress is being considered a ‘difficult’ mother because every issue is a fight with the school.”  DISAPPOINTING TREATMENTS WERE REPORTED BY 46% of PARENTS (N=1611)  STRESSFUL FOR PARENTS TO INVEST TIME, MONEY, ENERGY & HOPES FOR INTERVENTIONS THAT DO NOT YIELD EXPECTED RESULTS 69

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FAMILY STRESS: GETTING TREATMENTS (IAN RESEARCH REPORT, 2009, N=4028)  ALTERNATIVES TO QUALITY & AVAILABLILTY OF SERVICES CAN ALSO BE STRESSFUL  PAYING FOR PRIVATE SERVICES OR GIVING UP EMPLOYMENT TO HOME SCHOOL A CHILD CAUSES ADDITIONAL FINANCIAL PROBLEMS  STRUGGLES w/INSURANCE COMPANIES FOR REFUSAL TO PAY FOR AUTISM INTERVENTIONS ESCALATES THE STRESS  ONE UPSET IAN MOTHER SAID, “The fact that we have health insurance, but our HMO refuses to pay for many treatments, such as Sensory Integration Therapy, ABA Therapy, and Social Skills Therapy (when offered by a Speech Pathologist- instead of a Psychologist) is incredibly stressful.” 70

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FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN RESEARCH REPORT, 2009, N=4028)  A STAGGERING 89% of PARENTS (N=3585) REPORTED A “MODERATE” or ‘GREAT DEAL” of NEGATIVE IMPACT DUE TO WORRY OVER CHILD’S FUTURE  AS THEIR CHLDREN AGE, PARENTS CONCERNS MOVE TOWARD: -PROSPECTS FOR INDEPENDENT LIVING -OPPORTUNITIES FOR EMPLOYMENT -POTENTIAL ROMANTIC RELATIONSHIPS -HOW THEIR CHILDREN WILL FARE WHEN PARENTS CAN NO LONGER ADVOCATE & CARE FOR THEM 71

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FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN RESEARCH REPORT, 2009, N=4028)  MORE PARENTS FELT STRESS ABOUT THEIR CHILD’S FUTURE THAN ANY OTHER ISSUE INVESTIGATED, EVEN IF THEIR CHILD WAS HIGHER FUNCTIONING: 72

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FAMILY STRESS: WORRY ABOUT THE FUTURE (IAN RESEARCH REPORT, 2009, N=4028)  ONE IAN MOTHER SAID, “I cannot even put into words the fear that I feel for my child when I think of his future without his father and me.”  ANOTHER IAN MOTHER, “I am worried about what would happen to her if I was no longer around. I don’t want her brother to be responsible for her for the rest of his life, but, in probability, he will.”  DESPITE FEARS, MANY PARENTS REMAIN POSITIVE HOLDING ON TO THEIR SENSE OF OPTIMISM & HOPE FOR THEIR CHILDREN  ONE IAN PARENT SAID, “What parent doesn’t worry? But she is such a joy and incredible in her own way that I know she will find her place.” 73

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WHAT DO OUR FAMILIES NEED?  GREATER UNDERSTANDING & MEANINGFUL SUPPORT ON WHAT MAY BE A LONG JOURNEY  A RESPECTFUL & COMPASSIONATE COMMUNITY  INSURANCE COVERAGE!! or “BETTER” INSURANCE COVERAGE  INFORMATIVE RESEARCH: EVIDENCE-BASED INTERVENTIONS FOR ALL INDIVIDUALS w/ASD  TRAINED EDUCATIONAL PROFESSIONALS ACROSS DEVELOPMENTAL DISABILITIES w/SPECIALIZATION IN ASD  BETTER DISSEMINATION OF CURRENT KNOWLEDGE & PUBLISHED RESEARCH IN ASD  FOR SLPs: ESTABLISHING RESPECTFUL PROFESSIONAL PARTNERSHIPS WITH OUR PARENTS/CAREGIVERS 74